Spencer Cox, Iconic HIV Activist, Through the Eyes of His Mother and His Friend

Peter Staley: Right. So we waited until they had finished this long session of CPR. Then they finally said, "OK, you can go see him." And we went in there. He really looked like he had been through the wringer. He just wasn't there anymore. He was on complete life support, and it looked like he had been through the wringer, as far as them continuing to do these, kind of, really brutal sessions of CPR.

Tim and I said, "Please, don't do any more of those."

And then, within 15 minutes, they came out and said he was gone.

Terri Wilder: After Spencer's death, people seemed to reconnect together -- folks who had not seen each other in a while. And the Medius Working Group was formed. I know that they had an event in May addressing long-term survival. It seems that Spencer's death has brought the community back together. It seems, as tragic as it was, there was a purpose to it. It almost feels like it stimulated something to happen.

Peter Staley: Again, it's horrible that a tragedy [was needed to bring this about], but so much has come out of this, and continues to, that it's very ... it's a wonderful coda; let's put it that way.

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Beverly Cox: I continue to be amazed myself. I've talked to friends and I've said, "It's like he's still giving."

One of the examples is, I have a client who is a therapist. Actually, I'd never met her. We'd spoken, but it was only on business. I never said anything personal to her. I never told her I had children -- nothing.

So this year, she mailed her information in and then she called me and said, "Could I come pick up a copy of my tax return?" I said, "Sure, and we'll get to meet." So she came in and she sat down and we started talking. She's very interesting.

I said, "I have a son who passed away right before Christmas."

She said, "I know."

I said, "You know?" She didn't even know I had children.

She said, "I connected the dots. I started reading about him." And I showed her the playbill of his memorial. She said, "Do you mind if I have this? Do you have more?" I said, "No, you're welcome to keep it."

She went back to her office and she emailed me. She said, "I so appreciate your speaking to me about Spencer. The reason I asked you for a copy of the playbill is because I have patients with AIDS. I'm going to use this to show them that just because you have AIDS does not mean you can't accomplish things."

She'd seen the interview that David France [director of How to Survive a Plague] put out about his thoughts on life; she said, "I'm going to use that in my therapy also." And I thought: He's still helping people.

Peter Staley: Some of the things that have come out: First of all, the memorial was extraordinarily beautiful.

Beverly Cox: It was stunning.

Peter Staley: There was a line around the block. I was stunned by the turnout. And everybody afterwards was like, "We really miss each other." So it was a wake-up call that we had all lost touch. We had lost touch with Spencer. And we lost him before we knew it.

So some ACT UP alumni formed a committee, and started planning for a series of reunions, including the first one they did the weekend before Gay Pride, which was the quote-unquote, non-reunion reunion, that was over 350 ACT UP alumni, including Larry Kramer and all the regulars. That was just beautiful, absolutely beautiful. And they plan on doing more events in the future.

One of the things that Spencer pushed for in creating the Medius Institute for Gay Men's Health was actual research. "Give me the data," right? He wanted research really defining what the needs are of his generation. So Judy Rabkin, who is a great AIDS social science researcher, has been working with TAG to design a social science clinical trial, which has already gotten institutional review board approval. It will interview at least 200 ACT UP alumni, with a control group, to see how we are doing as a group, and what our needs are, and what our issues are -- both the good and the bad -- and how we were affected by that experience. So that study is going to happen.

Beverly Cox: I think Spencer would have been so proud of that, and would have loved to have been in the middle of it.

Peter Staley: Yeah. I mean, that's what he was calling for.

Beverly Cox: As a matter of fact, when he was living with me, we spoke about the deaths. I said, "Spencer, I'm sure you saw so much that a person really shouldn't have seen." And he said he did.

Recently, Medius Working Group called together, at this gorgeous conference room at Broadway's Equity union's meeting room, off Times Square -- we asked all the co-sponsoring organizations of the forum to send their high-level leaders, their CEOs. And we got amazing attendance. GMHC was there; amfAR; the LGBT Center; Sage; Harlem United, Callen-Lorde Community Health Center -- and on and on. All these AIDS groups across New York City came together.

We threw it to them and we said, "Listen. What did you hear at this forum? And what are you doing now to meet the needs of this generation? Or what would you like to do that we can all figure out how to implement?" We even had representatives from the City Council there, and from Christine Quinn's office, in case there were things that would be a good match for New York City to help fund. There were some great ideas put forward. And there's going to be a lot of follow-up on that that's going to happen.

But one of the most interesting things that happened that night was that these groups kept remarking, as the night went on, how useful it was to hear from each other on what they were doing. I was on the stage, and I was stunned. I said, "You mean you guys don't meet on a regular basis?" These are the leading AIDS groups across New York City. I thought that there was some mechanism by which they were sitting across from each other on a regular basis. But there wasn't. And I was, like, wow.

Spencer has gotten everybody in the room. And one of the bullet items that came out of that is we're going to set up some sort of mechanism, a New York City AIDS lobby, as it were, where these CEOs can be in touch with each other on an ongoing basis, and coordinate their efforts. You would think that that had been happening, but it hadn't. And now it will. And this all came out of that. So it's incredible.

Beverly Cox: His death, as awful and as shocking as it was to us, it is a comfort to me to know that it did stir things up like this.

He did miss the camaraderie, I can tell you, of the group. Because I think he lost that.

Peter Staley: Yeah, we all did. We all did.

Terri Wilder: I was at the event in May at Baruch College. One of the things that I walked away with -- and Peter, you even addressed it when you were speaking on the panel -- was that a lot of this is about trauma. It may be untreated post-traumatic stress disorder [PTSD]. And calling for trauma-informed care, and being aware of the long-termers who "survived the plague," that have been forgotten. I've certainly had friends in my hometown of Atlanta, Ga., say, "I don't feel like there's a place for me. I got infected in the '80s or the early '90s; and when I walk in, I feel like I'm just the old gay guy with AIDS. They don't really know what to do with me. I witnessed so much, and I don't really have anybody to talk to about it with."

Comment by: Wayne Stump
(Toronto, Ontario, Canada)
Wed., Sep. 18, 2013 at 8:35 pm EDT
So much to say about this. First of all, thank you to thebody.com for publishing this conversation and story. Otherwise I would not have learned about this remarkable (and may I add as a gay man, very handsome) man! Even though I volunteered for the Canadian AIDS Treatment Information Exchange and learned "a fair bit" about HIV and antiretroviral treatment and the evolution of the same, I was not as aware as I should be about the role of the activist community in the development of these medicines that certainly saved my bacon for what that's worth. I was more aware of the doctors and scientists involved in the effort (such as say Dale Kempf at Abbott Laboratories who was among the first to determine the molecular structure of HIV protease in 1988/1989, leading to the development of the very important class of protease inhibitor drugs). So I very much appreciate knowing about the ACT-UP folks who did so much to advocate and bring about these life-saving medicines. Thank you! Yes, this man's death is very troubling, and causes me to wonder and reflect on many issues that are just too many to expand on here (I note that I am running out of characters as I compose this comment. I did some further research and found a good article in the New York Times: http://www.nytimes.com/2013/02/24/fashion/what-really-killed-spencer-cox-aids-activist.html?pagewanted=all&_r=0
I am indeed sad that anyone, especially anyone lucky enough to live in a privileged developed country with access to these expensive drugs and the very best health care infrastructure, should die of HIV-related causes. And then someone who indeed advocated for the development and availability of life-saving treatments. Certainly a great deal to think about, and I thank you for this. Please accept my best regards,

Comment by: Douglas A. Houge
(Rural Minnesota)
Wed., Sep. 18, 2013 at 2:42 pm EDT
A small piece of me dies every time I hear of another passing. I was infected by 1983 and lived in DC during those awful years. At 53 years of age, I believe we all have contributed more than our share to the current progress of science. My psychiatrist wants to write off my militance as resulting from manic depression. I will not. There are miles to go before we sleep. I am so sorry for your loss.

Comment by: John Magisano
(NYC)
Thu., Sep. 12, 2013 at 8:43 pm EDT
Great interview. And institutional memory is lost so easily, reflected by the major AIDS groups not "sitting across from each other." For nearly two decades the New York AIDS Coalition was that mechanism to work on state policy and funding issues, and there was also NYCOCCHA (the NYC Communities of Color HIV/AIDS Initiative) that successfully pushed the city council for funding. I don't know if NYCOCHA still exists, but NYAC died a silent death a couple of years ago. A lot of the fracturing of the AIDS community came from the early success of funding initiatives like the Ryan White Care Act. All of the groups were (are) very busy competing for gov't dollars. Many of them got really fat for a while, but it's nothing but one funding cut after another for many years now. The groups should be together on budget advocacy, but would need new mechanisms to do it. Maybe this Medius effort will restart them. How can one get involved in Medius?

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